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Welcome to the Friedreich's Ataxia Research Alliance (FARA) patient registry. The
purpose of the registry is to collect some basic information on individuals with
FA. This information will be used to facilitate and expedite clinical trials and
get us all closer to treatments for FA. Basically, this is a way for you to
get your name and contact information to researchers who will be conducting clinical
research trials. Recruitment for clinical trials can often take a long
period of time especially for a rare disease like FA. Your participation in this
registry could help speed up that process considerably, because your information
would be shared with scientists and companies recruiting patients for FA clinical
trials in the near future.
This registry is only for individuals diagnosed with Friedreich's ataxia.
The homepage of this website also includes information on other patient registries and
clinical trials.
Preparing to register: When you register you will be asked about your contact information
and about your diagnosis. For example, there are questions about your age of onset and
genetic testing for FA. For individuals less than 18 years of age, we request that your
parent or guardian provide consent for entrance into the registry.
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